The ashtray is full, my soul is empty
I've been bombarded with memories of the past 22 years, memories of times that seem so far away now...memories that I cherish, but wish were not in the past...I wish I could get into a time machine and go back a few years...but I can't...Each week is harder than the one before it...they say time is a healer, but for me, it seems to be making things worse. I'm still waiting to wake up from this nightmare. I want to die, but not by my own hand. I want to live, but not like this...the pain is so bad...I am a mess, a total mess.
The house is a disaster, I've been living on frozen dinners and fast food...that's when I have an appetite. Sometimes I don't eat, sometimes I eat too much. I look forward to being able to go to sleep, as it's the only way I can escape this waking nightmare. I'm out of painkillers because I took too many last month and my doctor won't let me have them until the end of the week. I'm out of weed, and now I have learned that some woman in Ottawa is trying to shut down the Vancouver dispensaries...it's the only thing that helps my depression. I feel like I'm falling apart.
When I met Tom, I was 23, and I was a mess back then. He was 38, but he also had problems...it was like fate that brought us together that day on the beach. He has been like my anchor all these years, and now that he's gone, I feel totally lost, and scared...mainly of myself. I just hope I can get my shit together before it totally hits the fan, if not for me, for my son.
I hope this gets better...I don't think I've totally accepted it yet...
The house is a disaster, I've been living on frozen dinners and fast food...that's when I have an appetite. Sometimes I don't eat, sometimes I eat too much. I look forward to being able to go to sleep, as it's the only way I can escape this waking nightmare. I'm out of painkillers because I took too many last month and my doctor won't let me have them until the end of the week. I'm out of weed, and now I have learned that some woman in Ottawa is trying to shut down the Vancouver dispensaries...it's the only thing that helps my depression. I feel like I'm falling apart.
When I met Tom, I was 23, and I was a mess back then. He was 38, but he also had problems...it was like fate that brought us together that day on the beach. He has been like my anchor all these years, and now that he's gone, I feel totally lost, and scared...mainly of myself. I just hope I can get my shit together before it totally hits the fan, if not for me, for my son.
I hope this gets better...I don't think I've totally accepted it yet...
Replies
Does your doctor realize that you lost your husband not even 2 months ago?? Your GP should be helping you get counseling, meds, and also respite help with your son. What you have described is where I was at that stage as well. I had quit smoking for years, relapsed after Cliff died, and had to hide it from my sons as they knew smoking played a part in Cliff\'s death. Are social services giving you any support? I am sorry it hurts so bad, and it\'s so frightening at the same time. I know what that\'s like, and it\'s not a good place to be. I can tell you it won\'t always be so painful. It\'s not an easy road, especially for those of us with special needs kids, but you can get through this. I don\'t know why you are using weed, but it has a depressive effect because of the way it affects your metabolism (it\'s a complicated blood sugar and hormonal thing). If you were prescribed weed, I would suggest you talk with your doctor about an alternative. You may need an antidepressant or anti-anxiety med, at least for the short term. I am sorry you are in so much pain, and am sending you Love and Big Hugs, Martha
Thank you, Martha...I think my doctor is worried that I might follow the same fate as my husband, who took a lot of pills (among other things) for many years, which led to the condition that killed him. The painkillers that I use are Tylenol 3, which the doctor gives me 200/month for arthritis. Since Tommy passed, I have been throwing them back like candies...he does give me ativan, but I don\'t like to take it unless I absolutely have to. As for the pot, I\'ve been trying to get a prescription for it - I have been using it on a recreational level since my teens, and I have found that it kind of puts me on a different level, where I guess the best way to describe it is that it helps block out reality....not completely, but I find it helps me to relax. I don\'t drink alcohol, especially now that I have seen it\'s effects. I have never used antidepressants before, but if things don\'t improve with regard to my emotional turmoil, it might be worth trying. This is just so difficult to deal with..I never knew something could hurt so badly. Even before being admitted to the hospital, my husband had been ill for some time, and I knew this was probably coming...but I just wasn\'t prepared for the day it actually did.
wow Wendi. I came on tonight to check on my friends, and everybody has that sad little red face :(
I saw you joined the Synthetic Drugs & Painkillers group. I know something about that.
When I met Arlene, she was already in Pain Management for headaches. Mostly migraines, what they call \"chronic\" migraines that go on for days, and also cluster headaches - I guess it\'s a toss-up which is worse. They were being managed by large doses of NSAIDS, Naprosyn.
Then when she became pregnant, the headaches stopped. Her neurologist warned her, after birth be prepared for an onslaught like you never had before, and he was sure right.
Except she also discovered she had become intolerant of NSAIDS, after going into anaphylactic shock.
So she went into the little struggle that so many pain patients go through, we are not allowed to give you the amount of narcotic painkillers you need. She had a doctor in New York who tried, for a while, and pharmacists were freaking out about the amount of Tylenol she was taking, they didn\'t care about the narcotics. Then the doctor freaked out and dropped her, after several years.
I found a Pain Management specialist closer to us in NJ. He was highly respected, an anesthesiologist, who became Mayor after she started seeing him. He tried to wean her off, and she wanted to kill herself from the pain. So he accepted that she will be on painkillers the rest of her life.
He also worried about giving her too much, because she was very thin, down to 90 pounds at one point. It\'s not that she didn\'t eat, but sometimes she avoided a meal because it would interfere with her pain relief. Also she had an unusually fast metabolism, a dose that was supposed to last 6 hours lasted 2.
We tried so many meds, morphine and time released Exalgo (which cost $900/mo), sub-lingual Fentanyl, other stuff. What worked for her best was percoset. And I started supplementing what he gave her from the gray market, because I could not stand to see her suffer.
Our daughter suspected that she had a \"drug\" problem. I said she had a \"pain\" problem. She had liver enzyme tests and stuff. When she had pain meds, she could function. Sometimes she went through awful withdrawals. I was fortunate that I could supply enough medication, barely, altogether it cost $4-5000/mo because she was uninsured, and was afraid an HMO would mess with her treatment. Anyway, with the patented meds she was taking, with insurance they would not have covered some, and then we would have to pay for insurance, and basically break even. So I let her go uninsured so she wouldn\'t have to worry.
About a year ago she slipped in the bathroom, broke 3 ribs, and punctured her lung. They could not give her enough pain meds in the hospital because her tolerance was already so high. They told her she was \"drug seeking\" and basically called her a junkie. Our daughter supported that stance, but I knew she was really suffering, we were married for 25 years. She hated it when the meds made her feel doped up. But after that, I think she was taking too much more often, out of real pain. What else could she do? Suffer terribly?
She was 62, and they say a lot of \"older\" people never recover from a fall. Her lung healed well and she was sent home, with the stigma of a bums rush by anti-Semitic security guards laughing about \"the old skinny junkie.\"
She started getting lesions & blisters on her hands & feet, and then on her arms and legs. I took her to a doctor, who thought she was malnourished and prescribed vitamins & Boost - and she refused to take them. But she started eating more.
He prescribed silver sulfate for the wounds, and when she wouldn\'t let me change the bandages, they became infested with maggots. Her mental facilities declined - maybe she was having little strokes? She didn\'t get out of a rocking chair for over a week. My daughter and I got Adult Protective Services involved, but they didn\'t do much. My daughter called EMTs but they deemed her competent to refuse them. Then when she became incoherent, I called 911 again. The podiatrist who cleaned off her feet was nice, he said he\'s seen worse before, at least she still had all her toes.
Another round of tests finding nothing, another round of nurses calling her a drug-seeking junkie. The lesions & infections got a little better, and they discharged her home in a hospital bed. Fortunately I worked from home, so I could care fro her. And she let me change her dressings, and she was eating well, things seemed to be getting better.
But the lesions and blisters returned. I did some research to find out what might be causing them, since nobody at the hospitals gave any clue. I found a rare reaction to Tylenol that looked a lot like it. I talked to some doctors, who said, \"Poo-poo that is so rare.\" and I said \"Nobody can explain it. Even if it\'s rare, some people must get it. And she has always had strange reactions to drugs, including developing the allergy to NSAIDS.\" I begged her to stop taking medicines with Tylenol. At one point she was taking pure codeine, long ago when the pharmacists were bothering her. She said it doesn\'t work as well without the Tylenol, and you know, she was competent to make the decision. I still wonder if it was the stupid Tylenol that killed her.
She was doing so well. One evening I wrapped up work and asked her what she wanted for dinner. She was unresponsive, breathing shallowly. I called 911.
From the ER they rushed her to ICU because she was having trouble breathing, they had to intubate her. She was slowly getting stronger, and went off and on and off an on intubation again.
Then the doctor told us her liver was largely unfuctional. I told him she had been checked out by the last hospital, with liver tests and a MRI and they said her liver was normal. They were looking for bone cancer too, which came up negative. I asked what would cause such rapid liver damage? I told him about all the medication, and my theory about the Tylenol reaction. He PooPooed that. The best he could suggest was that some unknown anti-immune disorder was attacking her organs, her liver and her lungs, now her kidneys and stomach.
My daughter and I had a conference with her doctors. They said her recovery was unlikely, she was in her \"final decline.\" They would transfer her to hospice care, and try to make her comfortable. I made it VERY CLEAR that I would not accept any withholding of treatment to hasten the end. Then we discussed the DNR. They said in her fragile condition, she would not survive the procedures if she went into cardiac arrest. She had been able to communicate with them that she did not want any reasonable treatment withheld, a fighter to the end. I was with her a few weeks later when she vomited up blood and died.
Did the drugs cause her condition? And if so, it had been her choice because of her extreme pain. And no alternative. She had discussed with her pain specialist that she was terrified, as she got older, maybe had a fall, that she was already at the plateau level for the medications.
I felt guilty. Maybe I could have done something different. My daughter assured me that I was heroic taking care of her, and explored every possibility. That eased my guilt a little. Now our daughter worries that someday her own body will attack itself.
People in my wife\'s family don\'t live long. But I didn\'t think I would lose her at 62. She was 8 years older than me. When I proposed, she asked me \"Will you still need me, will you still feed me, when I\'m 64?\" We never got to find out, but I think the answer was obvious.
Me, I take an oxycodone most days because I have sharp arthritis pain between my shoulder blades from arthritis, and dull pain in my lower back, from a bad fall I had in college. After I had oral surgery, and the percoset wore off, I told my doctor I didn\'t realize how much pain I was in. I asked her for a small percoset prescription. Instead, she wanted to give me Celebrex. I asked her, \"Why should I take a dangerous drug when I can take a safe one, and I have never been addicted to anything (except cigarettes and a morning coffee)?\" She said, \"Celebrex has been proven as effective as percoset.\" I said no thanks. I would take one of my wife\'s pills from time to time. Now that my pain is worse, it\'s not hard to get prescription drugs in small quantities. I rarely take more than 7.5 milligrams once or twice a day (only when needed). I\'m going to a new PCP, maybe he will be more reasonable. Also I am no longer on Medicaid, I got kicked off Disability (for psychiatric reasons) because I make too much money, a kind of \"graduation\" in my opinion.
It nags me that my daughter would call me an \"enabler.\" I told her we did everything, found one of the best Pain Specialists in the State - but she didn\'t know like I knew how much my wife was suffering.
In the end, maybe it had nothing at all to do with the drugs. maybe her number was up, and her body turned on itself. And I know I did everything in my power to cure her, and when I couldn\'t do that, give her love and dignity.
short answer (I have said before)
I was alive for 25 years before I met Arlene; then we were together for 30 years.
Now I am in a new phase of life, without Arlene again. G_d willing I will live another 25 years.
And she wouldn\'t want me to be unhappy for the rest of my life :) she\'s telling me, still: be a Man, do what you have to do, because nobody\'s going to do it for you